ME on the front page,
blanket media coverage. The moment when the scale of ME in children
finally became undeniable by the medical establishment. Remember?

Sarah Boseley of the
Guardian wrote:

The largest study
ever made of the controversial illness ME, the modern plague doctors
call Chronic Fatigue Syndrome (CFS) shows it is responsible for 51%
of long-term sickness absence among schoolchildren.

Findings published
yesterday are certain to heat further the debate between sufferers -
who believe they have fallen victim to a viral infection - and the
medical establishment, which largely thinks it is primarily a
psychological condition.

She went on:

One of the authors
of the report yesterday called it an “educational timebomb” and
called for help for victims to study at home, in direct contravention
of the advice of three Royal Colleges, who in October urged that
children return to school.

The study, by a
former head teacher and a microbiologist, was conducted in more than
1,000 schools in six local education authorities over a five year
period, from 1991 to 1995. It found that 42% of staff and children
away for more than two months had ME. It was 51% among children
alone.

Jane Colby, a
former head teacher recovering from ME who is one of the authors,
said: “This disease shows a sinister pattern right across the
school population. No one can deny how serious it is.”

The 1,098 schools
which agreed to participate in the study - nearly 3,000 were
approached - were asked to report the number of children and staff
on long-term sick leave, and to give the reason. Twenty per cent of
schools responding said they had cases of ME. In 392 schools,
long-term sickness absence was reported, out of which 224 blamed ME.
Next came cancer and leukaemia, reported by 161 schools.

Going into further
details:

The average
prevalence of ME among schoolchildren on these figures was 70 per
100,000 children, the authors said, and 500 per 100,000 staff.

Ms Colby said
theirs was “only the baseline figure” for children with ME.
Various schools gave the reason for absence as “prolonged
undiagnosed viral illness”, which she believes is probably ME.
There were also clusters of cases that lay in the areas of schools
that chose not to participate.

“What is worrying
is that nobody is taking it seriously. Nobody is doing this
officially. We're looking at a very big problem producing enormous
educational deficit.”

Ms Colby and
co-author Elizabeth Dowsett, honorary consultant microbiologist to
the South Essex Health Trust, called for children with ME to be given
special support to allow them to learn at home.

“The purpose of
education is to educate, not just to put children into schools.
Social isolation can be addressed separately.”

Then we get to the
reaction:

The Royal College of
Physicians, which was part of a joint working party on ME with the
Royal Colleges of Psychiatrists and General Practitioners, countered
yesterday that home tuition was not the best thing.

“The Colleges
felt the best approach is one which encourages the child to lead as
normal a life as possible, with regular school attendance - there is
some evidence that this leads to a more rapid recovery.

“Prolonged
absence from school, as with other causes of ill health, affects not
only academic performance, but also makes it increasingly difficult
to maintain a school-based social life and eventually to return.”

Since then, of course,
interactive virtual education schemes that incorporate social contact
have shown that children with ME allowed to study at home attain
higher levels of academic achievement, not lower. And their health is
saved from what is now known to be relapse-producing physical and
mental effort to attend school and study in lessons designed for
people who are not ill.

The Guardian continued:

Charles Shepherd,
medical director of the ME Association, said the report should help
children with CFS who were often misdiagnosed or not treated
properly, even when their illness was recognised.

“Doctors don't
always understand this illness. The respsonse seems to be one of two
extremes,” he said. “Either you are told to go to bed, which is
completely wrong, or you are told to exercise and pick yourself up.
It actually needs a balance.”

The Royal College
of Physicians also disputed the assertion from Ms Colby and Dr
Dowsett that “the clustering pattern suggests that ME results from
an infection”. They claimed the biggest cluster extended over a
number of schools “in an area containing recreational water heavily
polluted with sewage”.

They called for an
investigation into microbiological agents which could trigger an
epidemic of ME among children.

Since that time, work
by John Chia MD in America is showing up the long-term persistence of
enteroviral particles in the stomach, and work at Dundee university
has shown a high rate of white blood cell death, and inflammation,
consistent with a persistent viral infection.

The government
Department for Education accepted all my recommendations in its 2013
statutory guidance to local authorities about the education of
children too unwell to attend school in the normal way.

These have been
excellent successes and they show the importance of long term
commitment to this work. But it is always necessary to be vigilant.
The ever-growing “chronic fatigue” empire could well undermine
what has been achieved, with its attempts to tell parents they must
adhere to strict regimes; regimes that many report are making
matters worse. To sideline humanitarian - and legal - recommendations
for education while the child recovers would be reprehensible.